Category Archives: Patient/Medical

Port-Free and In Remission

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Monday, June 14, 2010 I got my port out. The gynecological oncologist and the hematologist / oncologist said ok! I made the appointment to remove it fast.

Removing a port is an in-office procedure. They give you a numbing agent, make a cut, and pull it out (with care). Then they stitch you up. I had a rather common reaction while they were pulling the port out – I almost fainted. I got to sit still for 10 minutes or so afterwords to make sure I didn’t pass out walking out.

I guess the screams of pain when they gave me the local had already scared too many waiting patients. I have really sensitive skin.

I bet some of you are wondering what my CA-125 was? It was a completely normal and remission fulfilling 10!

Of course, my pekinese is irritated at me for not picking him up while that wound heals.

Now the irritating news.

It seems I have a rather common tongue fungal infection that the periodontist found. He sees it in cancer survivors all the time. I have one problem. Even though Majic Mouthrinse is compounded the suspension solution used uses benzyl alcohol (allergic) and two corn derivatives: sorbitol and glycerin. I tried to tell the periodontist this while I was there, but he said it was compounded. Now I have to figure out what to do to treat this problem.

Back Went Out

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I had big plans for this week. DH has the week off. I thought I would be able to get some stuff cleaned up that takes a person with more strength than I have. Sunday made a different decision for me.

I went to take SMR’s leash off after a walk and my back seized in a spasm. If you have ever experienced such, you know what I am speaking of. If you haven’t, well, You don’t know how lucky you are. I have been downing muscle relaxants and treating my back gently ever since. Of course, this had to happen on Memorial Day Weekend so I couldn’t see the chiropractor until today. By this time the nerve had been pinched and the pain radiated down my leg and up my side. This made the adjustment such that it only gave a little relief. I will have to go back again for a second adjustment tomorrow. Luckily, the chiropractor is actually walking distance – not that I will be walking there!

Did I also mention that I have job interviews and such this week? Not to mention my 3 months oncologists’ appointment? I am beginning to wonder what in the universe I managed to piss off recently.

Oh, I have actually been doing some research for a blog post about blog posts as I am thinking of cleaning up my blog (going forward). It is sort of hard to concentrate on anything when every small movement causes back twinges.

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Cancer, Ultrasounds, and TMI

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I’ve been having some issues due to last year’s surgery for ovarian cancer. What I’m about to go into may be too TMI for some folks, so turn back now if you are uncomfortable about bodily functions. Cancer takes a lot of things away – and sometimes aftercare reminds you of everything that has been lost.

Here is the TMI part:

I have been having issues with my bowels. What can happen after extensive abdominal surgery is adhesions. Now regular readers from the infertility and cancer blogospheres are probably familiar with adhesions and some of the things they can cause. Well, one of the things adhesions can do is block one’s bowel movements from being as easy as they should be – and even, rarely, block them altogether.

The last time I went in to get my port flushed, I mentioned that I had been having intermittent pain in the area the tumor had been found. Associated with that was recurring constipation with very painful bowel movements. Nothing like wanting to scream in pain as you are moving your bowels. My first thought, being the optimist I am, was, “shit, the cancer is back.” The nurse, doctor, and PA were all saying “adhesions.”

End TMI part.

We took my CA-125 and it came back at 10. That was a major relief.

I moseyed on over to get my ultrasound and CT scan done at the hospital where I have had my other films taken. It is good to go to the same place so they have comparisons. Of course, I have to remind them that not even when I was in the hospital did anyone want to give me contrast dye, so, yes, I was able to do both on the same day.

The young lady who was doing my ultrasound was quite friendly and we were talking a bit. She had taken my history, and, well, I think she got a wee bit too relaxed. I asked her what field of ultrasound she wanted to continue in as she was an intern. She mentioned specialty OB/GYN. No problem.

Now, anyone who has had an abdominal ultrasound knows what it is like to have pressure on your bladder from all of the water they make you drink beforehand. I was saying how much I wanted to go pee…

“Can you imagine what it’s like for the pregnant ladies.” stated the ultrasound tech who had just taken my history.

My reply was an even, “That is not an appropriate thing to say.”

She became very apologetic and said, “I am so sorry, and I just took your history, I am so sorry.” She was genuinely apologizing.

I told her it was ok. She said it wasn’t ok. I tried to convey it was better to have happen with someone like me who has become sort of used to dealing with these faux pas instead of someone in a very fragile state of mind. I was mostly thinking of someone who might have just miscarried or just found out she was infertile.

I soon found that I had a new ultrasound tech. I know that it is hard doing this. I really did not want to make her feel really bad, only use that time as a teaching moment.

Did it sound like – from my description – that I was too harsh?

Anyway, I found out soon whether I am going to need surgery for the adhesions or not. Hopefully they will correct themselves as the issues don’t seem to be as bad as they were – but I will admit to an incredible amount of gas of late.

(And, yes, these issues are part of the reason I haven’t been writing as much. I have also found a new – to me – entertainment venue which I will be writing on shortly.)

Kosher for Passover a God Send for the Corn Allergic

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Every year I go on a shopping spree during the weeks preceding Passover. Corn has infiltrated almost everything eaten in the USA – except for this small pocket of time things like Coca-Cola and marshmallows are available without corn.

Normally, I would have been shopping more than one day – and would get a real supply of Kosher for Passover treats. This year? The head cold that took a good part of Southeastern Michigan out for at least a week. First it hit me, then my DH.

On the day I decided to do the Kosher for Passover shopping, his majesty, SMR fell off the bed and we had to spend most of the day at the veterinarian! It seems the little guy has developed really bad arthritis on one of his front elbows, and a milder case in his other front elbow. He is now on puppy pain medication for it.

So, I got all of 2 hours to hit the main Kosher Kroger in our area. The Kosher for Passover section they normally have was much smaller than I remembered from past years. This might be because I usually shop before Passover actually starts.

So, to all of the Ashkenazi Jews who keep strict Passover dietary rules – meaning no corn or beans – I say THANK-YOU!

Celebrating or Panicking, Maybe We Should Wait and See

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This past week Health Insurance / Health Care was finally passed in some tortuous form. There is good and bad with it as there is with all legislation. Personally, I’m not celebrating and I’m not panicking. I’m waiting.

Now, the law is structured in a way that whatever regulatory agency that may be given the responsibility to oversee it can do so. The biggest problem with that? So was the banking and finance industry. Will it be regulated? I really don’t know yet.

I like some of the changes – almost everyone has to buy or pay a fine. Sorry, but I think that is a public good and have no patience with libertarians who scream and holler about this governmental mandate.

I also like the no pre-existing exclusion that went into place. I just wish that there wasn’t a 4 year gap for adults. And, I wish it were retroactive due to how crooked insurers really are. But, well, I have a bit of a vengeful nature when it comes to true evil.

One of the big things I don’t like? The way the subsidies are working. There are going to be a lot of folks who border that upper working and lower middle class line that will not be able to afford either insurance or the fine.

Another thing I am not too happy about? Antihistamines and other over-the-counter medicines will no longer be allowed on FSA and HSA expenses. There are a lot of people for whom those are major expenses.

The Christian Science Monitor has two great articles on the Health Care Reform:

Oh, and just as an aside, here is an article that goes into why I – and many others – can no longer take Republicans seriously:

It pretty much summarizes why the panic coming from the Right is rightfully ignored by almost anyone with a brain today.

Also, when Attorney General Cox in Michigan filed his suit against the federal government’s health care reform, Governor Granholm ordered him to file a suit against himself for wasting state money.

Waiting Room Observations

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I was struck recently by the differences between the way the waiting rooms at the oncologists’ office and the reproductive endocrinologists’ office.

One was silence. The other was camaraderie. I think many readers already know which was which.

Though cancer comes with death associated with it, at both the gynecological oncologist and medical oncologist patients seek one another out and talk to each other. All of us have different diagnosis and prognosis. Despite that, we all are faced with putting these poisons in our bodies. This shared experience makes folks want to connect – even if superficially – with one another.

It is interesting that the chemotherapy room is set up in a manner to encourage interaction. It was a half-circle of chairs with a television in the middle. The TV was invariably turned to something inane like a cooking or makeover (of whatever sort) show. Discussions were kept somewhat light as the drugs caused our brains to be less than focused. You take benadryl in an IV and see how alert you are!

Contrast that with the waiting room in the fertility clinic. Men and women wait with downcast eyes – afraid to hope. Quiet conversations are only between couples who have walked in together. Those who violate that are looked at askance. There is a dread that exists within those walls, a despair that doesn’t exist in cancer centers where mortality is being addressed. Rather, a most fragile hope is being held – or lost – within these walls. Not everyone is going to get a baby, and most patients know it.

Why are the two places so different? And the fertility clinic so much less lively? Wouldn’t you think a place that was trying to create life would be more lively than a place that faces death daily? Somehow, the opposite is true. It is almost like cancer patients have a better ability to hope because theirs is a limited hope that society accepts as such.

I wonder if that will change, after all, there was a Monty Python sketch that was done where the word “cancer” could not be said. They changed it to “leprosy.”

Perhaps the fact that we can now speak openly of cancer – and I am old enough to remember when we barely spoke of it – is why there is such a vast difference.

Is it because we still shun conversations about fertility that the quiet dread permeates the fertility clinic’s waiting room and not the cancer doctors’ waiting rooms?

Last Chemo CBC With Follow-Up Plan Meeting

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Today, Thursday, October 15, 2009 was the last time I had to have a full CBC related to my 6 chemotherapy sessions for ovarian cancer. (I’ve put an Excel graph showing the progress from before session one to today.)

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I have heard tell that many patients feel a bit lost about no longer coming in for chemotherapy and bloodwork every week. Honestly, I don’t feel lost, only concerned that I will lose track of when I’m supposed to go to the doctor since I still haven’t found a decent job. (Michigan’s economy really sucks.)

Anyway, things aren’t exactly over – which is why, much to everyone’s confusion, DH and I aren’t ready to celebrate it “being over.” First, I have a consult with Dr. Sunshine, the gynecological oncologist. He has to review my case and approve any and all follow-up. The first bit of follow-up includes getting both another CA-125 and CT scan at least 3 to 4 weeks after my last chemotherapy session.

After the first CA-125 and CT scan come back “normal” (as DH and I are sure they will), I get to make an appointment to take out the port. This, both DH and I are very eager to make happen. With the two thrombophilias I have, I must continue taking Lovenox (and bruising my belly) until it comes out – and maybe for a little while after it comes out. For those unfamiliar with Lovenox, it is a blood thinner with fewer ill effects and dietary restrictions than other blood thinners. Hematologists love it. The problem with Lovenox? No matter how careful you are, you will bruise. I never bruised from the variety of fertility medications I injected, so it is not my injection technique!

Once the port comes out, the next step is to plan for a CA-125 and CT Scan every 3 months for the next year. The second year is every 6 months, and so on. Personally, I’m pretty confident the cancer isn’t coming back for a very long time – if family medical history is any indicator.

Somewhere in the midst of all this I have to figure out how to get off the now necessary, but not always necessary, pain killers I am taking for the adhesions that are growing in my belly. It was adhesion city down there before they went in, there is no reason to believe that new adhesions aren’t forming – especially with the nasty pelvic pain that comes if I forget to take my medication. (Yes, I have left that patch on for 4 days and wondered why there was breakthrough pain. This is why I am mostly worried about losing track of “when.”)

So, plan in hand, my next step is to see Dr. Sunshine and review the plan Ms. Clarity outlined. I was really hoping to be rid of the port sooner rather than later, but will keep it in until I get those clean reports back.

Yes, I’m Weird (Medically Speaking)

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It has been independently confirmed that it is not my imagination. I’m just weird.

Most ovarian cancer patients aren’t diagnosed until Stage 3 or 4.

I just happened to be opened up in time for it to be Stage 1C – but the tumor was so fast a week later may have been stage 4. (Highly unusual.)

Normal chemotherapy patients do not crave tacos and hot sauce.

I do. Independent cancer practitioners have advised other patients that my diet would not be conducive to the health of other patients. Isn’t hot sauce a part of the basic food groups?

Normal cancer patients are freaked out by cancer.

I’m more freaked out about walking into an office where popcorn is being popped. I can’t help it. Cancer is sooo predictable compared to allergy. And, people get cancer. They don’t get allergy or infertility.

Normal cancer patients get rejection and denied letters from their insurance.

I get “finalized” letters for 0.00 USD from my insurance companies that lay unattended for at least a month. No one has ever even seen such a thing before.

So, “I iz a speshul snowflake!” (Blech, yuck.)

Final Chemo That Almost Wasn’t

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Insurance. My oncologist called at 2:15 the Tuesday before my last chemotherapy telling us that the insurance hadn’t paid for anything even though the insurance company was saying we were covered.

The oncologist was ready to refer us to a cheaper center. (This made me mad. I dislike the assumption that I cannot afford something when there were many ways in which we could have worked this out with everyone getting paid properly. It is good DH was the one dealing with this. Funnily, both he and I came up with the exact same solutions if there had been more issues.) At this point, the options were, float the money (thousands) to the oncologist, go to the unknown center, or, delay chemo a week to see what the devil was going on.

DH was left alone to deal with this as I had just gone off to the chiropractor and to run some preparatory errands. He got on the phone to the customer service number to try and figure out what was going on. Each person he talked to told him that, yes, indeed, I have coverage. No one could answer what was going on. Well, that is, until he had been transferred 7 times. On the seventh transfer, he found someone who could look into it.

I walked in the door and was greeted by this. Of course, this was not enough of a distraction. DH has a friend who is having major medical difficulties, and the “Check This Person Clause” had been invoked over instant messenger. It seems that folks were very worried that the news that the working diagnosis (for a year) was no longer the working diagnosis. Somehow, between phone calls, DH had managed to go over there and check on him “without him knowing that we asked you to check on him.” (I don’t know why people don’t want others to know that they care about their friends. I think it is a guy thing.)

So, DH instructed me to create a login so we could see my claims. (Yet another misinterpretation of HIPAA causing undue problems. Even though it is DH’s policy, each person has to have a separate ID. No other policy I have ever had did this. It is stupid.) We were shocked to open several “finalized” claims to see that they had been finalized to $0.00 USD. Yes, zero amount had been the amount paid and finalized as if covered. The insurance company had, somehow caused my name to become disassociated with my policy.

I still showed up as being on the policy in most places seen by both the insurer and the medical professionals. I even had the coverage. But, somehow, claims were being put through at zero dollars. No one who was involved in this had ever seen anything like this fiasco before. As usual, I found something new to cause issues.

Now, lest anyone think it was easy to get this figured out. I had to have the doctor, his biller, DH, my case manager nurse, and DH (worth mentioning twice as he was on fire), haranguing these folks since I was scheduled for my final chemotherapy within 48 hours!

They are still sorting the mess they made out. This was 100% the fault of the insurance company. They even admitted it was 100% their fault. This was not the first mess up to happen due to their IT systems not being very well managed. I have had to inform other providers that they are redoing all the claims from August forward due to this mess!

As to the friend? He seems to be doing ok despite having his medical situation suddenly get more complicated again.

I will tell of the final chemotherapy at another time. I expect that DH may comment on this post since he has a better grasp of what happened than I do since, well, I had to take dexamethasone the next day and that just makes me nutty.

Note: Yes, the reviews are a bit wonky at the moment. I haven’t gotten a chance to fix them as I’m still recovering from the Final Chemo That Was.

Last Day of Ovarian Cancer Awareness September 2009 Giveaway

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Giveaway is now closed. Comments will remain open.

September 30, 2009 means that Ovarian Cancer (and Gynecological Cancer) Awareness Month is over. Time to start planning for next year, but first, some things to think about, and even be glad of as September closes and October comes into being.

I was contacted via email by L’Oreal Paris to help make people aware of what they are doing to help support the Ovarian Cancer Research Fund – and have been doing for 12 years.

This all came about after I blogged about the L’Oreal Hope Line (1-877-OV-HOPE-1) without being contacted. The nice lady at the publicity company they are using sent me information about what L’Oreal Paris is doing to support the fight against ovarian cancer. (I didn’t ask permission to use her name, so won’t be naming her.)

The publicity company also sent me a L’Oreal Color of Hope make-up bag to use as a giveaway to help raise awareness.

Grants Given By L’Oreal Paris

As part of L’Oreal Paris’ support for ovarian cancer research over the years, they have awarded three grants to researchers working to fight existing ovarian cancer and find an early detection test.

Jonathon Berek, M.D., M.M.S. is a professor and the chair of the Department of Obstretics and Gynecology at Stanford University School of Medicine. He is also Co-Director of the Women’s Program at Stanford. His work is focused on facilitating communication among the various researches working on the vaccines and immunotherapies that are showing promise in the fight against Ovarian Cancer.

Dr. Berek’s grant title is Cooperative Ovarian Cancer Group for Immunotherapy (COGI).

Heidi Gray, M.D. is an assistant professor in the Department of Obstretrics and Gynecology at the University of Washington. She is working on finding the elusive screening test that could save thousands of women every year from hearing the words, “You have Stage 3/4 Ovarian Cancer. No, there was no way you could have known this early as the symptoms are so hard to detect and easy to think are something else.” Her research is focused on looking at immunologic markers to determine early signs of ovarian cancer.

Dr. Gray’s grant title is Identification of an Immunologic Signature of Ovarian Cancer for Use as an Early Cancer Screening.

Anil Sood, M.D. is a physician scientist and Director of Ovarian Cancer Research at the University of Texas, M. D. Anderson Cancer Center. His research is focused on identfiying and controlling proteins involved in ovarian cancer that seem to influence life expectancy. This is part of the tumor target therapy research that many cancer patients hear about.

Dr. Sood’s grant is titled Novel siRNA Based Therapeutic Approaches for Ovarian Carcinoma.

I think we should all support L’Oreal Paris as they support the Ovarian Cancer Research Fund by funding these important grants!

(This is my layman’s translation of the much more technical explanations sent me found here as a graphic . If I got it wrong, please tell me and I will fix it!)

The Contest/Drawing for L’Oreal’s Color of Hope Make-up Bag

I am going to do a random drawing on the comments on this post – unless you say you don’t want to be in the drawing and comment anyway. Why would you comment anyway? Well, because as September 2009′s Ovarian Cancer Awareness Month comes to a close it is time to start thinking of how September 2010′s Ovarian Cancer Awareness Month can be more successful.

  • How can we make women more aware of the symptoms? Currently there is no early warning sign that can’t be mistaken for something else.
  • What types of fundraisers for ovarian cancer research and awareness would people like to see – including what would get the media’s attention? (This isn’t just about the Ovarian Cancer Research Fund. There are other missions that are just as important.)
  • Who should those of us who want to raise awareness be targeting in the media? What magazines, newspapers, television shows, and web sites would reach the most women? (Publishing plans issues as much as a year in advance, so NOW is the time to start pushing those stories.)

Leave a comment with your ideas and suggestions. Don’t worry if it is the same as someone else’s suggestion, that just means it is something that needs to be looked at more closely! I have smart readers, so I know you will have ideas I would never think of without your help.

The drawing will be October 6, 2009, entries must be entered by midnight ET October 5, 2009.